Joint Hypermobility syndrome

Paddy I've pm'd you.

My daughter developed pain in her knees when she was 8 but it was many years later when she was told she had jhs. She had physio on and off for a few years but it never really improved as any attempt to strengthen her knees led to her kneecap moving out of position so it was a no win situation. I'm afraid she just resorts to painkillers when she can't put up with it anymore. She has found that moving around helps to stop it seizing up. If she sits or lays for too long it's difficult to get going again.

I can empathise more with the fibro as I have ME. I've found it's best to think of your body as a rechargeable battery that you never let drop below 25%. If you know it's dropping then you have to rest. I get warning signs (my lips tingle and my speech slurs or I get my words mixed up). She has to listen to her body and only do what she's able to do comfortably each day. That means some days she'll get things done and other days she'll do very little. I'm afraid it's the nature of the beast.

Does she know that fibro is a reason to claim PIP. As you probably know. it's not the easiest of benefits to get but it's worth a try. Even if she only gets the lowest amount it will help with the extra expenses that come with long term illness. Also if it affects her ability to walk she may qualify for a blue badge or a disabled bus pass.

yes she tried last year and they said she would get the minimum payment then they sent a letter saying they were appealing it..6 months later she went to a tribunal and got the minimum payment.She needed to have proof of her illness to get a blue badge so she can take her girls out on her rare good days .She had the payment stopped this year and she has to reapply she's worried they'll take the badge off her too.Its been a hellish few years for her and this hasn't helped but we'll do all we can to find something that will give her some relief .Thanks for your input ,all advice gratefully received .

Hi Paddyann - Just to let you know that there's some info winging its way to you via GNHQ! It was for children, but I daresay it would be fine for adults as well. Good luck to your daughter, I hope it helps!

I would be interested in this info as my 10 year old GD has hyperflexibility which I guess is the same thing and has intermittent pain and weak wrists.

Greenfinch I've only just seen your post. I've contacted HQ to ask them to send you the info that I sent to Paddyann.

Me too I would be interested in the info as we have a 9year old DGS with it. He does get uncomfortable from time to time. His heart was checked out early on and is ok. We had to complete a genetic form and found out DH and I both have it slightly and have passed it on
Doc was lovely and said "you'll have some fabulous party tricks when you're older"! Being a boy, apparently, his joints will strengthen at puberty.

Newquay D 's party trick is to touch the soles of her feet from toe to heel together whilst keeping her legs straight. Freaks me out she has had frequent sprained ankles and can only wear flats. Strangely it dosen't affect any other joints

DDiL has it and, possibly, DD. They have both given up the competitive sport of how far can you flex your joints?

my daughter has thinning connective tissue caused by JHS,its causing a lot of pain and as she has Fibromyalgia its adding another layer she's finding hard to cope with.To make matters worse she was diagnosed with type two diabetes yesterday so something else to contend with.She was the healthiest baby and child ,never had as much as a cold .She's heading for 40 and theres hardly a month passes with out something else added to her list of awful illnesses.She worries about the effect on her marriage and her children.It breaks my heart